When describing his recovery after transplant for acute myelogenous leukemia (AML) in 2012, Amit says there were many challenges along the way. “Recovery was at times slow and difficult,” he says. One of the hardest times was when he got graft-versus-host disease (GVHD) of the skin.

“It was mostly extreme dryness and itchiness on my legs,” says Amit. When he saw these signs, he called his transplant doctor right away. His doctor asked Amit questions and asked to see photos of the affected skin. Because he wasn’t living near his transplant center when he got GVHD of the skin, a local doctor treated him. But Amit’s local doctor worked with his transplant team.

Symptoms of GVHD of the skin

Transplant doctors stress that finding GVHD early makes it more likely that treatment will work. “I encourage patients to be proactive. Look at your skin regularly for early signs or symptoms of GVHD,” says Edward Cowen, MD, in the Dermatology Branch of the Center for Cancer Research at the National Cancer Institutes.

“Keep an eye out for any new skin rash or red, dry itchy skin. These are all signs of GVHD of the skin,” he says.

GVHD of the skin may cause the skin to itch, feel like a sunburn or feel “woody” like a stick. Some people with GVHD of the skin may feel a pulling or tightening underneath the skin.

Sclerotic chronic GVHD is a specific type of skin GVHD. “Sclerotic” means thickening. This form of skin GVHD causes thickening, tightness and hardening of the skin and deeper tissues. Sclerosis can also make it hard to move your joints.

Treating GVHD of the skin

If doctors diagnose GVHD of the skin, a common first treatment is an immunosuppressant medicine. This is a type of medicine that holds back your immune system. It may be something you take by mouth or by injection. It can help reduce inflammation (redness and swelling), ease any sclerosis may you already have, and prevent new sclerosis. Your doctor might also prescribe immunosuppressive creams or lotions that you rub on your skin, which can ease symptoms such as itch or rash.

Amit’s treatment began with oral steroids. But when the GVHD didn’t get better, Amit had to spend a couple of weeks applying steroid cream all over his body. He wore a plastic body suit to sleep so the cream would work better. “It was a miserable physical sensation, and it made it really hard to get rest,” says Amit. “But it worked!”

Living with GVHD of the skin

Amit says that acting quickly when he saw the signs of his GVHD of the skin was key to his successful recovery. “I’m doing great!” he says.

To keep himself healthy and to lower the chance that his GVHD will return, Amit follows this important bit of advice: Stay out of the sun. Sun exposure can make chronic GVHD worse and cause skin cancer and sun damage. So he is extra careful to use sunscreen and to wear sun-protective clothes.

Amit has no major lasting effects from his GVHD of the skin. But he does have some slight skin roughness. He adds that this may be due to the psoriasis that he has had for quite a while. Best of all he currently has no itching, which he says is a very big deal and has greatly improved his quality of life.

And he offers this advice to transplant recipients who either are coping with GVHD of the skin now or are concerned that they may experience it. “Talk to your doctor, of course. But also be patient with the treatment course,” he says. “It can take time, but in my experience it does work eventually.”

Resources for you

If you’ve been diagnosed with GVHD of the skin or would like to learn more, download Fast Facts: Chronic GVHD of the Skin, developed by Be The Match® and the Chronic Graft-versus-Host Disease Consortium. The fact sheet offers information on how to ease symptoms of GVHD of the skin, how it can be treated and when to call your doctor.

Also, Dr. Cowen shares this free fact sheet for patients on GVHD of the skin. The fact sheet is published in the Journal of the American Medical Association Dermatology and has information on symptoms and treatment.

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For people with life-threatening blood cancers like leukemia and lymphoma or other diseases, a cure exists. Be The Match connects patients with their donor match for a life-saving marrow or umbilical cord blood transplant.